Thursday, October 16, 2014

Down Syndrome Awareness Month - James Update

October is Down syndrome awareness month so I figured since I'm not training too hard I might as well give a James update. 

This summer has been an explosion for James in terms of milestones and learning new skills. He started walking which quickly progressed to running which has in turn led to full on chaos! I'm fairly certain James does not get his never-willing-to-sit-down mentality from me...I mean really where did that come from? He is constantly on the go, climbing, running, tripping, closing doors (yes this is one of his favorite activities) and dancing. It's been a fun and exhausting summer of chasing. 

James has also made huge progress with his communication. Last spring he used a modified version of more and go and that was really it. On last count he has over 50 signs that he now uses. He only uses about 4 of those spontaneously, but it's major progress. Early this summer his frustration level was through the roof as he really wanted to communicate and tell us what he needed. The frustration has really calmed down now that he can ask for help or tell us he wants a drink or to eat or go to bed. Some people have cautioned that if we focus too much on signing that it will further delay his verbal speech. According to James' private speech therapist there are no studies that indicate this and really, if he can communicate and be that much less frustrated I'll take it. Even if it means he might be delayed a bit more in verbal speech. I've known James long enough now to know that once he crosses that frustration boundary he doesn't learn. It doesn't spur him to work harder on using his words, he just shuts down. So I'm not going to worry about that. We'll take signing for now. He is also using a few verbal words: mom, dad, up and down. His word approximations have increased as well and he frequently uses ba, da, ma for words like ball and home. 

James has also had a pretty healthy past few months. He's still quite small (21.5 lb) but has grown, to what feels like quite tall (33.75"). Poor kid can't keep pants on...well it's that or where flood pants. Aside from the typical back to school snottiness and requisite ear infection we've been pretty lucky this summer. He's still on oxygen at night, but his cardiologist thought in another year we could look at weaning him off. So we're hopeful on that front.



All in all James is doing great! He loves music, balls and is really into cars lately. His favorite music remains Daft Punk and Michael Franti, which he signs along with all the time. He blows kisses, gives kisses and gives the world's best hugs (I may be partial but if you've ever had the opportunity to be on the receiving end of a 'James hug' you know this is no exaggeration!) James doesn't do much to defy the sterotype of kids with Ds being happy and full of love...that pretty much describes James 90% of the time. There are still good days and bad days. Times I wish he didn't have to struggle as much as he does. Times where I wish we didn't have to be frequent flyers at Children's. Times where I see other 2 yo and wish I could do some of the same things with James. For some reason fall is always hard. I wish I could take him to the pumpkin farm and let him walk next to me each drinking out hot chocolates. But James doesn't like chocolate milk, warm or cold, he doesn't listen very well (I'm sure this is not a Ds thing), and he certainly does not walk next to me pretty much anywhere. He doesn't get doing things like helping make cookies at home, he hates wearing costumes, and gets very overwhelmed in public settings. I know he'll get there and someday I'll laugh that I ever worried about him drinking hot chocolate or making cookies and he may refuse to ever go a day without being in costume. It's just we're not there yet, there's always tomorrow right? This year when I took him to the farm with EI he cried and hid in my arms for an hr, he refused to pet the animals, didn't want apple cider and certainly was not interested in riding the cow train. But we played in the tepee and he went down the slide all by himself. So it may not have been the perfect day at the farm, but I'll take the small things, I'll take that he climbed 3 stairs by himself, took a bit of help setting down on the slide, and then slid down all by himself. That's more than we were able to do last year!

So that's what James has been up to the last few months. It's been a constant whirlwind of learning new things, running around and going to appointments. But that's are normal and it doesn't scare me anymore. I may feel bad when there are things he can't quite do yet that other kids his age are able to, but I no longer worry will he ever I know he WILL it just may take awhile. 

Week September 29 - October 5

Miles Running: 42.7
Hours Hiking and Running: 9.0

No comments:

Post a Comment